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Kevin’s 33rd day in a hospital room. (Now it’s 34 days as of Feb 13, 2019)

The last 4 days Kevin has become increasingly desperate. The nursing staff at the Medical Care Unit where he is are such a great group of professionals. They have tried to keep him occupied, even taking him on wheel chair rides around the floor, but each day that passes he grows more restless. Kevin is a 5 year old (6’2” tall) that wants to go back to his safe/familiar room, surrounded by his things. He also wants to go for hikes, to the store, the movie theater, and the library. Now he is hitting himself in the stomach and legs with such force that his legs and abdomen are completely covered with purple and black bruises. This is the only way that he can deal with this overwhelming stress. He is limping because he hurt his left leg during the self-injuring actions that now are happening continuously throughout the day. Yesterday he became increasingly anxious with each passing hour, pleading for his “Bellingham house”. He began to scream, hit his room door and window and security was called. Kevin hit his RN and one of the security guard during the incident when they attempted to keep him safe in his room. Throughout the day he was heavily medicated with no success. At night, he managed to escape from his room and run downstairs to the hospital lobby and then outside where he was wrestled by security until Bellingham police arrived.
After he was guided back to his room by the police he was finally medicated with an IM injection of B52 (Benadryl/Haldol/Lorazepam). He has been asleep since then, in a way I feel this is better for him to stop his mental anguish and physical self-inflicted pain.

This situation is a disgrace, my child deserves better from our system. He will severely injure hospital staff or will be gravely injured by medication administration and/or being restrained.

Plead for my son to be able to go to a respite bed where he can have physical activity outside of his room, He is unable to comprehend what or why this is happening to him. He needs a less restrictive environment where he can feel free and safe.
please feel free to share!

There has been a history of violations with this company – many coming from not paying their employees appropriately and understaffing with a high staff turnover rate and lack of nurse delegation services.

Aacres,, WA LLC had at least $40,200.00in civil fines for several violations of care between June 11, 2018 and October 17, 2018. Many of these violations repeat violations cited in previous investigations in the past year.

Seattle – (January 25, 2019) – The Seattle Office of Labor Standards (“OLS”) announces a $120,050 settlement with Aacres WA, LLC, a company that provides supportive living services to people with developmental disabilities. The OLS investigation found that Aacres failed to pay the correct minimum wage for 377 employees who worked or attended trainings in Seattle throughout 2017.

Alexander Njuguna is one of the workers benefiting from the settlement. “I am excited that we will get the money that is owed to us. There are so many workers over the years who complained about the injustice we faced. Being compensated will be good for all of us and reminds us that if someone does you wrong, and the law is in your favor, there can be justice. I would like to emphasize that all employees have rights and an employee should not be afraid to raise concerns in fear of retaliation by the employer.”

SEIU 775 represents more than 45,000 long-term and home healthcare workers in Washington State and Montana. “Thousands of SEIU 775 caregivers working in Seattle care for individuals with developmental disabilities in home care and supported living. Our Union works closely with employers and advocates to ensure that caregivers are treated with dignity and respect. Yet, in some cases, caregivers like other workers, aren’t treated fairly and aren’t paid what they are owed,” said Sterling Harders, SEIU 775 President. “OLS’ work to hold Aacres accountable and their fight to ensure no employer gets away with wage theft has a positive impact not just on our city’s workers, but on the level of care received by people with disabilities.”

Aacres recently announced that it was closing its King County operations after the Washington State Department of Social and Health Services cited them for serious deficiencies in care standards. A sister company, SL Start & Associates, was also shut down for violations of care standards. Aacres is a subsidiary of Spokane-based Embassy Management which is owned by a nationwide company, U.S. Community Behavioral, and New York-based private equity firm, Bregal Partners.

Below is an excerpt regarding the recent (April 2018) de-certification and closure of SL Start Supported Living Services:

SL Start and Aacres are both owned by the same company—Spokane-based Embassy Management. According to business filings in Washington and Delaware and news reports, Embassy Management is a subsidiary of U.S. Community Behavioral, which in turn is owned by Bregal Partners, a New York private equity firm.

Don Clintsman, the deputy assistant secretary of the Developmental Disabilities Administration, said he understood the concern about moving clients to a sister organization, but said the two entities are different.

“The expertise that Embassy has shown and that Aacres has shown in running a supported living program give us confidence the SL Start residents will get the right service,” Clintsman said.

Excuse me – what EXPERTISE did Aacres have in running a supported living program?

This report discusses the crisis situation that we have gotten ourselves into by not listening to the families, caregivers and people involved. It has been known for some time that people are boarding in the emergency rooms and hospitals because there are no safe community options for them.

With the mindset and policy that refuses to acknowledge that the Intermediate Care Facility has a place in the continuum of care and admission to these potentially life saving communities is prohibited by the administration, we have developed a situation that is much worse.

Has DDA and the legislature willingly been closing their eyes to this situation? The fact that there has been no tracking of this by DDA or by the hospitals is neglectful when trying to understand the needs of the population.

The trauma and cost that is wasted is horrendous. Reading these stories makes me very angry and very sad. I cannot imagine the trauma that these people have endured while “living” in the emergency room or hospital.

As a parent of a disabled child who also experienced some of this (but nowhere near the extent described in the report) I remember times of crisis when there was no place to go.

Extreme mania and psychosis caused medical complications which necessitated a medical hospitalization. My son was loud, did not sleep, was hallucinating and would not stay in one place. He paced the hospital halls with family or caregivers (not enough nurses to provide his care). At one point, we were told that we needed to keep him in his room since he was scaring the other patients. Clearly, they did not understand that confining him to his room would only agitate him more and cause more noise and activity that would be even more disruptive.

The inpatient psychiatric unit was not much better – while they were able to manage his mania/psychosis, they were not prepared to manage medical issues or understand his intellectual/developmental disability.

The option that was suggested by the discharge team from the psych unit was “call the police” for the next crisis – meaning that my son, at age 14, would be taken to jail.

Jails and hospitals should not even be a consideration for this population in crisis.

The only place that would have been appropriate to provide both the comprehensive care needed to stabilize my son was the ICF/IID – unfortunately, he was denied admission for at least one year after a request was made and consequently had several lengthy hospitalization before this was finally approved.

Thank you to the DD Ombuds for addressing this crisis situation and developing a plan for correction. Now that it is acknowledged, a solution can be addressed.

Thomas had a terrific time on this outing and is really happy with his new map. One of the reasons he likes it so much is because it’s the same map we had on our wall at home while he and his siblings were all there growing up.

He emailed me many times telling me that he was going to take the bus downtown to Pike Place Market, go out to lunch and the map store with Craig.

About as soon as he got home he sent me the following email:

“Dear mommimahd a great time on the bus with creg today “

I love the emails that Thomas sends me – many times it takes quite a bit of deciphering but it’s really worth it. Being able to use an iPad has greatly benefited him and provided him with several ways to communicate and interact with his community.

I am a hand spinner and greatly enjoy the various fibers in my hands, spinning onto a drop spindle to make yarn. From the spindle, the yarn is wound onto a device from which a skein is made. The yarn becomes a bit stretched on the device and when removed, the yarn shrinks to its final length. The skeins are labeled by their yardage and so this natural shrinkage needs to be taken into consideration. The spinner needs to know how much the yarn will shrink in order to accurately label the yardage so that the knitter knows how much to purchase in order to make and finish the project.

Knitted sock, ball of yarn and knitting needles on a wooden surface. Top view.

There are some agencies, advocates, and legislators who spin a story regarding the support, care needs, costs of care, residential setting choice and person-centered planning for many in our community who live with intellectual and developmental disabilities.

The problem we face is a matter of underestimating costs rather than overestimating. Much of the problem is that the legislators use “averages” of the whole for budget forecast rather than “averages” for a specific population.

Last year I provided legislators with the costs of care for my son who resides in supported living. He had been a resident of the intermediate care facility (ICF) and only moved to supported living due to issues of medical/nursing care that could not be met at the ICF. Last year, his cost in the community was higher than the cost of care in the ICF. This year his costs will be higher still due to needing more 1:1 support and the fact that he lives in Seattle and the agency (not state funds) must pay the caregivers the Seattle minimum wage ($15.00/hour) rather than the contracted state reimbursement (wages start at roughly $11-12.00/hour)

One of our seasoned State Senators wrote ” Obviously some clients need more support than others. Unfortunately, the numbers you are using are misleading and imply that community care services are more expensive than RHC care. Since the state pays for both, we have significant experience with many different client and settings, and the various elements of costs. We have used averages for our proposals because that is the most accurate way to account for a group of clients and settings. On average, community care is much less costly than RHC care.

As follow up, this senator then wrote “The cost of community care is lower than the cost of RHC care. That is known by our budget writers because we pay the bills. Individuals have variances, but the OVERALL cost is lower. We have had hundreds of RHC clients transition to community care so we have real experience and real data on this. By providing your personal experience to Senator you have convinced her that it applies to the overall cost of care, and that is not accurate or factual. I hope you will help me correct the record. “

I did follow up with a response as to why the costs I reported were very important to take into consideration since my son was representative of the type of resident in the ICF that may desire to move to a community home with supported living. I wrote ” The issue of providing data for my son is extremely relevant to this issue, it is factual and accurate. I provided the exact documents that were provided to me by DDA so if for some reason they are inaccurate, that is an issue that needs to be addressed with DDA. I would be more than glad to provide you with the same information.” I did not hear back from her.

With the upcoming legislative season just around the corner, this annual issue will again come to the surface. We need not only affordable housing but trained caregivers for these people with higher support needs. We need to look at the cost of care for this specific population – not the OVERALL AVERAGE as the senator above thinks is more accurate. I totally disagree with her assessment and understanding of the care needed and cost to provide this care.

New Hampshire has developed a High-Cost Review Committee which looked specifically at those with higher support needs, their Support Intensity Scale score and the costs of care. Below is a graph documenting some of the costs attributed to people in different residential settings in New Hampshire.

The graphs below were generated by the data provided by Washington State Developmental Disabilities Administration 2017 Caseload information.

If our legislators continue to use the OVERALL AVERAGE cost as the measure for cost of care, we will continue dive into deeper crisis.

In order to best serve our community members and start to crawl out this hole, we need to fund appropriately. That means that we need to look at the different types of support needs and numbers of people in those categories. This information is readily available through the Developmental Disabilities Administration – one just needs to ask for the right information and use it.

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans to consolidate from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling. This is not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility. Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID? The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus. Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports. These wages and supports need to be appropriately funded to provide the services. This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.

Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years. The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised. We had frequent contact, outings and visits both at our home and his. Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.

I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive. I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania. I remember expressing my great concern regarding his increasing mania to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.

This Thanksgiving, our son was a totally different person. He was at our family home for at least 4 hours and stayed focused and helpful. His participation in meal prep and tasks was amazing. He even sat at the table and ate a nice sized meal. When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.

I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates. This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services. My son has greatly benefited in so many ways and in such a short time.

Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed. It was great to see these changes and work with this team to create solutions that worked. But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.

Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks. He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer. He is becoming more self-directed in being able to communicate his needs and desires.

We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living. Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers. We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.

Some supported care agencies are experiencing staff turnover rates of 50-70%. This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers. Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.

Supported living is in crisis. Funding for direct care staff has been ignored for years while costs have continued to increase. The level of intensity of staff support is increasing and we need to provide the appropriate staff. This level of care is critical to many in our community to enable them to have a meaningful life experience.

A meaningful life is more than just having support staff in your home though. It is being able to go out and be in the community. Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments. Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing. We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But, unless an agency is able to fund raise for these critical necessities to a meaningful life, the clients will go without.

In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. . My son has a job at Lowe’s working 2 hours each weekday morning (supported employment provided by PROVAIL). and needs transportation to and from work . He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week. Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.

It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.

Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort. We, as parents, guardians, residents, community members and staff, can make a real difference. We can adapt to changes better and address issues directly when they arise. There is more control over one’s life. We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.

Below are some suggestions for what you can DO to help make someone’s life better:

Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.

2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.

Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:

(for clarification on the RN – this amount has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)

If you would like to donate to Alpha Supported Living Services you can reach them at

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